Merci! Grazie! Danke!

Merci! Grazie! Danke!

I want to thank Raiha at http://livinginpak.wordpress.com/ for nominating me for the Liebster Award!  I’d heard of it once before but honestly had to do a little research to figure out what it actually is.  According to Google Translator, “liebster” is a German word which translates as “dearest,” which to me is such a sweet compliment!

Rules for Accepting the Liebster Award

You must link back the person who nominated you.
You must answer the 10 Liebster questions given to you by the nominee before you.
You must pick 10 bloggers to be nominated for the award with under 200 followers.
You must come up with 10 questions for your nominees to answer.
You must go to their blogs and notify your nominees.

Below you’ll find my answers to Raiha‘s questions!

1. Who’s baby are you?  Mom’s or Dad’s?

I am without a doubt my mother’s daughter.  There’s no denying our resemblance, which to me isn’t a bad thing at all!  She is beautiful, youthful, and stands for what she believes in.  Like her, I love science and both teaching and learning.  As I get older I find myself saying the same things and doing the same things as her more and more, and we both laugh about it.  I find it a wonderful compliment when someone tells me I remind them of her, and I only hope that someday I am as wonderful a mother to my children as she has been to me.  

2. Do you like children? (Babies, more specifically?)

I really love kids.  Sure, sometimes my nieces are often overstimulating and throw me into an awful headache episode, but I love them and my nephew to death.

Babies and young children are so shapeable, so impressionable, and I love being able to share in the experiences that will transform them into the people they become.  The innocent joy in simple moments that children have is a rare, if not nonexistent, quality in adults, and I love it when I get the chance to spend time with children and rekindle those feelings.

3. Are you a cat person or a dog person?

Is that even a question?  While I am a huge general animal lover, dogs trump cats no matter what.

Right now we have three dogs at our house: a 9-y.o. Jack Russell Terrier named Nutmeg (she’s mine and will always be the favorite), a 10-month-old Standard Poodle named Clyde, and a 3-y.o. Golden Retriever named Cinnamon who is due in a month with Clyde’s puppies!  We’re hoping to add one of the Golden Doodle puppies to our clan, and I just can’t wait to get my hands on those puppies.

Don’t get me wrong, cats can be fun….when they want to be.  But no matter what you do or where you go, your dog will always greet you with unconditional, exploding love and kisses and a wagging tail, and that kind of love cannot be replicated in any other kind of relationship.

I’ve had dogs that stay by my side after surgery, comfort me when I’m hurting, and play with me when I need a break from work or inactivity.  Their intuitiveness and ability to fill voids is an incredible trait, and it makes me sad to think there are people in this world who don’t own a dog.

4. Where do you think a woman’s place is?  The office or the kitchen?

There isn’t one place for a woman.  I enjoy cooking, in fact last night I made cheeseburger pie and rhubarb crisp for myself and my parents, and it actually turned out delicious!  But I don’t enjoy cooking every night, and no family woman (or man, for that matter) should have to.

But I also enjoy studying and working, and would go crazy if I didn’t have a purpose beyond keeping the house tidy (as evidenced by this past summer of post-grad unemployment).  This transition year between undergrad and medical school might be good for me (I’m learning more about cooking and have more motivation in keeping the house clean), but it’s also reminded me that I hate not being a student/having a job!

For some women, either the kitchen or the office is their place, but only if that’s where their heart leads them!

5. Are you the first, middle, last or only child?

I’m the baby of five children – 3 half-siblings who are 13+ years older and one full brother who preceded me by 1.5 years.

Most middle/older siblings argue that the youngest is spoiled, but I don’t see it that way.  Not only am I the youngest, but I’m my mom’s little girl, so I was maybe favored a little.  But because I’m the baby girl of the family, I was hugely protected by my parents and still am.  No boyfriend was good enough (or if he was, he didn’t stick around long!), my curfew was always earlier than my brother’s, et cetera.

That being said, I tended to be more responsible than my brother (Lace, if you’re reading this, no offense!!!!!) when it came to certain things.  But, I was also at times the wild child, most definitely a symptom of my status as the baby.

6. Do you exercise?

Erryday.  Well, four days a week when I’m being really good.  I actually just joined a new gym today after having to workout at home all summer.

Because of the Ehlers-Danlos Syndrome, I have to exercise to compensate for the instability in my joints.  I can’t run much due to joint/cardiopulmonary issues, but I do lift weights to strengthen the muscles that support my joints.  For five years I was very fortunate to have a boyfriend who was an exercise expert and wrote really wonderful workouts for me, but now that I’m on my own (my choice, not his), I’m learning to DIY my workouts.

Not only does resistance exercise strengthen the muscles that keep me upright, but the release of endorphins makes me feel so much better, not to mention staying in shape means I look pretty darn good!  And with my background in nutrition (I have my Bachelor’s degree in nutritional science), it seems fitting that I make exercise such a priority in my life.

***If anyone reading this has questions about how I can lift weights with EDS, please comment below and I’ll respond or perhaps eventually write a blog about it!

7. What’s worse, resisting chocolate or gaining a few pounds?

Chocolate all the way!

Besides, since the pounds gained weren’t specified as muscle or fat, I’m gonna go ahead and pretend Raiha meant muscle, which is actually a very good thing!  I don’t even weigh myself anymore because when I start a workout after taking a break my weight fluctuates and eventually goes up as I gain muscle mass.

Plus, chocolate is pretty much the best thing that ever was or is (except horses).

8. Would you consider yourself an introvert or extrovert?

I’m gonna say I’m with the majority of the general population that lies somewhere in the middle.  Because of the social effects of dealing with EDS in high school before I had my dx, I’m probably more introvert that extrovert though.

I became very guarded after so many people questioned the reality of what I was suffering and friends stopped being friends.  It made my college experience less than what I wish I’d had, but I also learned to overcome some of that.  I still have a hard time making new friends, but those that I have are the absolute best, and around them I’m quite the extrovert!

9. Do you like to read?

YES.  When I was younger I read constantly.  I was one of the first two kids in my elementary school to read Harry Potter, and I read pretty much every book in the series in 2 or 3 days.

College impaired my ability to enjoy reading, as I’m sure medical school will do even further, but I still enjoy reading when I have the time.  If you haven’t read the Scarpetta books by Patricia Cornwell, I highly suggest them!  Every time we take a long trip we rent one of her books on tape because the reader does such a good job and the books are irresistible!

I also read a lot of often nerdy non-fiction books like my current choice, The Emperor of All Maladies, a Biography of Cancer by Siddhartha Mukherjee.  American Sniper by the late war hero and Navy SEAL Chris Kyle is an excellent read as well.

10. What genre of music do you like most?

Oh boy, that’s a very loaded question.

Right now country music is really great, so that’s right up there.  But I still love the sound of the Beatles, MUSE, Jack Johnson, Maroon 5 and the irresistible crooning of Michael Bublé.  I listen to pretty much everything.  Except heavy metal.  Yikes……

 

 

So that’s it!  There are my answers!  Next up I need to nominate some fellow new bloggers!  Unfortunately I haven’t exposed myself to too many blogs yet, so here are some of the great ones I’ve encountered thus far:

  1. Being Nenne – Such beautiful honesty shines through her words and I find her blogs very hard not to read! 🙂
  2. dontwakeSofia – I can totally relate to this blog as I go through my own year off, and her posts are often filled with lots of timely comic relief!

I wish I knew of more wonderful bloggers to add to this list of nominations, but I will certainly bring more to light as I find them!

 

Finally, my 10 questions for these two wonderful ladies:

  1. What was the name of your best childhood friend, and are you still friends today?
  2. Everyone’s got a little nerd in them – what brings out the nerd in you?
  3. In the event of an apocalypse (nuclear, zombie, reckoning, etc.), where would you go and why?
  4. How long have you had your blog?
  5. Batman or Superman? (Batman is always the right answer)
  6. If you had your education entirely paid for, what would you study and how far would you go with it?
  7. What is your favorite form of exercise? (Channel surfing totally counts.)
  8. Is your blog your only creative outlet?
  9. What’s worse – no internet or no books?
  10. Who is your favorite James Bond?

 

Thanks again to Raiha for the nomination!  I’m glad I got a chance to pay it forward 🙂

 

These Boots were Made for Riding

These Boots were Made for Riding

Get your mind out of the gutter, I’m talking about horses!

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Over the past two and a half years, these boots have seen more than 20 horse shows and hundreds of hours in the saddle.  They’ve taken me to horse shows in Dayton, at Ohio State University, Miami University, Ohio University and Otterbein University as well as private barn shows, open shows at the county fair and beginner lessons I’ve taught locally.

They’ve seen me go flying off a horse between jumps and straight into a jump standard.  They’ve seen me thrown into a wall by a horse that was just a little too quick.  And they’ve been with me through the ankle and knee pain necessary to become a better rider.

These boots have learned, with me, to keep their heels down, toes out, and calves tight, regardless of whether or not I have stirrup irons.

They’ve been cleaned, conditioned, polished and repeat, dozens of times, with the love of an owner who knows how much they cost and how long they need to last.

These boots have received the sideways glances and stares while being worn to class when I just didn’t have time to change after a lesson, and they’ve walked the aisles of Meijer, Kroger and Giant Eagle more times than they’d like to admit.

These boots have seen the tears of defeat and, more importantly, the tears of joy that come from a really great round.

My journey with these boots has only begun, and so far they’ve accompanied me to great things 🙂

http://dailypost.wordpress.com/2013/08/24/daily-prompt-walk/

First Impressions: EDS Defined

First Impressions: EDS Defined

ImageWhen meeting someone new, be it a potential employer, significant other, or your new doctor, the impression you make will directly influence your relationship moving forward.  So today’s blog is an effort to provide you with a first impression of Ehlers-Danlos Syndrome, defined by my own experiences with the condition.

Ehlers-Danlos Syndrome is a connective tissue disorder, and specifically it is a genetic defect that impairs the body’s ability to produce collagen.  (Bear with me, I’ll explain everything!)  Connective tissue (CT) is essentially the glue that holds the body together, and collagen is a protein that is the main component of CT.  Connective tissue is found in virtually every tissue, from skin to eyes to bones and blood vessels.

What this means for sufferers of EDS is that, because our “glue” isn’t the best quality, our bodies tend to stretch and sometimes fall apart more easily.

I have EDS – Hypermobility Type, formerly known as Type III.  The number one manifestation of this type is being extremely flexible, which is a direct result of the collagen defect.  Most people assume this just means I have cool party tricks, like bending my fingers backwards or bending at the waist and resting my wrists on the floor.  But the implications of this hypermobility are much worse.

DISCLAIMER: I can’t speak for everyone who suffers from EDS, so I’m going to focus on the symptoms I experience.  Please note that this is not a complete biography of the condition, only my personal account.

JOINTS

I grew up with more “growing pains” than the normal kid, but half the time I think my parents just thought I was complaining too much.  I was the youngest of five kids, so I did milk every scrape and bruise.  As I got involved in sports, these pains began to include chronic ankle sprains and neck pain.  After my cheerleading accident, these pains worsened severely.

The growing pains, aches, and eventual injuries I incurred (and continue to experience) are caused by, you guessed it, hypermobility.  Because the tissues supporting my joints are weaker than the average person, there is less strength available to protect my joints from injury.  Where a normal person might be just a little sore after jumping and landing wrong on their ankle, tripping on a step or twisting their knee during a dance, my joints can’t sustain the force applied to them and instead I receive larger stretches and tears in those supporting ligaments.

Think of it as a radio tower:  a regular tower or antenna has cables, guy-wires, attached to the ground to keep it upright.  In my case, my joints are like a free-standing tower that has broken or missing cables.  A strong enough gust of wind could easily knock it down without that extra support.

Not only does this hypermobility cause problems during exercise, but it also causes problems during normal daily functions.  I have a difficult time carrying dishes because of weakness in my fingers, and I have often had acute pain during writing for school that becomes chronic over time.

The hypermobility in my back is the most severe, with chronic pain in virtually every level of my spine and dysfunction in my neck, ribs, and sacroiliac (SI) joints that require frequent physical therapy to keep from subluxating (partially dislocating).

While my joint problems are the most severe of my symptoms, EDS plays a role in the entire body and these are just a few of the many problems caused by the condition.

SKIN

You’ll often find people with EDS have pale, nearly translucent skin, that allows you to see a lot of veins near the surface of the skin.  In my case, I have large purple and blue streaks along my chest, arms and legs because the skin in those areas is so thin and clear that you can see the veins.  Other skin complications include easy bruising and tearing, poor wound healing, and irregular scarring, which can cause complications following surgery.

EYES & MOUTH

Another group of key symptoms in my case are the eye problems I deal with.  I got glasses in the 2nd grade and am legally blind without glasses or contacts.  I have very thick lenses and an astigmatism severe enough in one eye that I wear a special contact lens, called a toric lens, that is specially designed to stay in place.

I’ve also suffered from dry eye severe enough that I use Restasis prescription drops daily.  I also have a condition that I first believed to be Keratoconus, a degenerative eye condition connected to EDS, but discovered it is actually an unusual condition called Thygeson’s Superficial Punctate Keratitis.  Perhaps someday we’ll discover a link between it and EDS, but as of now little is known about it.

A less serious but just as annoying eye problem I experience is photophobia, or hypersensitivity to light.  I often need sunglasses even when it’s raining, and when my Thygeson’s is acting up I cannot go outside without them.  This often results in my signature one-eyed squint in all outdoor photos, and this is the case for many EDSers!

Along with the dry eye problems, I suffer from dry mouth which puts me at a higher risk for gingivitis and cavities.  The only ways I’ve found to help combat this are drinking LOTS of water, chewing gum and using a dry mouth mouthwash.  Other problems we experience in the dental region are TMJ pain (grinding or gritting teeth), and hyperextensibility of the jaw, which makes dental visits very uncomfortable.

CARDIOVASCULAR

Many EDSers are born with heart murmurs, an extra “woosh” sound detected when listening to the heartbeat.  In many cases, including mine as far as we can tell as of now, this is an innocent murmur, meaning there are no defects causing the sound.  But for some, this can be caused by various heart defects, including Mitral Valve Prolapse or a hole somewhere in the heart.  In those cases, attention is needed to prevent ruptures, aneurysms and other life-threatening complications.

EDS manifests itself in many ways in the cardiovascular system, and in my case it is with autonomic dystonia (aka POTS, although I have yet to receive diagnosis).  This means I experience large, fast drops in blood pressure when I change positions too fast (i.e. standing up from working in the garden).  In some cases this has resulted in my nearly passing out.  I also have problems breathing, especially in humid weather, that have yet to be explained but almost positively relate to the EDS.

NEUROLOGICAL

People with EDS often suffer from headaches, neuropathy (numbness or tingling in extremities), balance problems and something called “brain fog” (it’s like a prolonged, more frustrating brain fart!).  One of the best methods I’ve found for combating these symptoms is the practice of Tai Chi.

Many, including myself, also have a reduced sensitivity to lidocaine and other numbing agents often used during surgical procedures such as nerve blocks and dental procedures.  In my case this has led to requiring general anesthesia for a spinal procedure I have done periodically in my neck.

GASTROINTESTINAL

Digestive problems are yet another issue for many EDSers, and often involve irritable bowel syndrome (IBS), acid reflux and GERD.

PAIN

Much of the pain experienced with EDS is “idiopathic,” meaning the cause is unknown.  Note that this is the only time I will ever use this word, because I consider it a poor excuse for real pain whose cause can’t be pinpointed.  Idiopathic does not equal imaginary, contrary to popular belief.

In coming posts I will talk about the modalities I use to treat the pain and other symptoms I experience, with links to some really wonderful products I use every day!

EMOTIONAL

EDS can and does also have an emotional impact on patients.  At some point everyone questions whether their pain is real, and when friends, family and physicians question you, it puts a lot of pressure on your sanity.  Without a good support system and proper intervention, EDSers often fall victim to depression.

So, this turned out way longer than I expected, and to be honest I’m probably not going to go back and proof everything because writing this is mentally exhausting.  I hope this brief (ha!) overview of EDS has answered some questions you may have had and that it has been an accurate and comprehensible introduction to Ehlers-Danlos Syndrome.  Just know that this is the tip of the iceberg, and in the coming months I’ll be able to do so much more to raise awareness while telling my story 🙂

http://dailypost.wordpress.com/2013/08/22/daily-prompt-first/

Photo by buddawiggi

O-H!

O-H!

Today is Ohio State’s first day of school, and it’s the first time in eighteen years I haven’t partaken in first day of school activities.  I thought I would be thrilled to graduate and that I wouldn’t miss this day, but here it is and I’m feeling surprisingly melancholy.

I didn’t quite have the college experience I’d wished for.  Because I spent the first two years figuring out that I had EDS and trying to understand how to treat my condition, I didn’t have a lot of fun.  I didn’t go out with friends, and I didn’t even go to a bar or an OSU football game (which is sacrilege according to classmates) until my senior year.

I found myself, and some wonderful friends, on the Hunt Seat Equestrian Team.  As I became a more competitive member I also saw myself becoming the person I had, deep down, always been – outgoing, goofy and able to have fun without worrying about what others think.

My condition didn’t have to keep me from having fun, and I only wish I’d realized that sooner, because I missed out on so much that I will never get back.

I think the friendships are what I miss the most about college.  My best friend and many others are still enjoying (hating) the college life while I live at home and substitute teach, pay loans, and compete for a spot in an osteopathic medical school.  It feels like I was moving into my freshman dorm just yesterday.  Time really does fly…

So if you’re reading this and you are starting back to school this week, take a minute to think of those like myself, and remember to enjoy it!  College may not be the best years of your life, but it’s still up to you to make them great!

OSU 2013
How firm thy friendship…. O-HI-O!

http://dailypost.wordpress.com/2013/08/21/daily-prompt-learning-2/

Quote

For every compl…

For every complex problem there is an answer that is clear, simple, and wrong.

– H.L. Mencken

This short quote epitomizes the struggle of diagnosing and understanding Ehlers-Danlos Syndrome.  A puzzle of seemingly disconnected symptoms, it is often misdiagnosed as an easier solution such as arthritis, growing pains, lupus, fibromyalgia, or the ever-popular “it’s all in your head.”  

Look for a blog in the coming days where I define EDS based on my own experiences and explain why the simple answer is often the wrong one.

Everything Appears to be Normal

Everything Appears to be Normal

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Anyone suffering from EDS or a similar “invisible” illness can understand how frustrating these words are.  The event that finally made me start this blog involved hearing this from a cardiologist who two weeks earlier had told me that I had a hole in my heart.

The experience I’ve had with this doctor deeply saddens me, but also strengthens my resolve to become a physician who respects and believes in my patients.  Upon first meeting Dr. Norton (name changed to protect his identity), he failed to take a few minutes to ask about my life and try to connect with me on a personal level.  In all experiences I’ve had with physicians, both as a patient and while shadowing, this has been key to providing the best care possible.  You cannot effectively treat your patient if you do not know them, if you fail to understand their lifestyle and how it is impacted by their symptoms.  Cookie-cutter patients just don’t exist.

I received a copy of his notes from this appointment and saw that there were multiple errors caused by his failure to ask important questions about the history of my symptoms during the exam.  When he told me I had an Atrial Septal Defect (ASD), he in no way explained what it was and simply told me we would do an echocardiogram with a Bubble Study.  Because he didn’t bother to get to know me, he assumed I was just an uneducated patient who wasn’t deserving of an explanation because it would be a waste of his time.

I spent the next five days or so thinking my life was about to change drastically, that I would have bypass surgery and a difficult healing process that would be worsened by the EDS.  (Understand that I had to do my OWN research to find this out, because he didn’t bother to tell me what complications accompany such a defect).  So when during the test no hole was detected, I was speechless.  As it happens, he couldn’t actually diagnose the ASD until performing the test, and therefore put me through all of that emotional distress for naught.

My most recent encounter with Dr. Norton involved a stress test I had done a few days ago, which was the last straw.  After the test he told me my results were above average compared to his typical patients (most of whom are double or triple my age with congenital or other heart problems), and that I seemed perfectly normal.  When I asked him why I get dizzy doing lunges and squats during workouts, his answer was that perhaps I wasn’t in as good of shape as I used to be (keep in mind, I’m a 22-year old woman who lifts weights 4 days/week).  He then suggested that maybe I should warm up before I work out, but if he’d taken that time to get to know me he’d know that I have an academic background involving health and exercise and I’m smart about warming up before a lift.  When I asked him to explain why I suffer from unpredictable presyncope, dizziness, shortness of breath and tunnel vision, he said I’m just going to have to live with it.  He continued to provide essentially one-word responses to my questions; answers that insulted my intelligence and offended my lifestyle.  The appointment ended with him announcing that there was nothing more he could do for me.

And he’s right, there is nothing more he can do for me.  I’ve been so fortunate to have met with almost exclusively wonderful doctors who respect me, understand that I am well-educated in topics relating to healthcare and believe me when I say something is wrong.  But when I do encounter a physician like Dr. Norton, I’m not willing to roll over.  I’ll keep looking until I find the right cardiologist who is capable of getting to know me as a human being and taking all of my symptoms and my lifestyle into account.

I’m not sharing this story to complain about a crappy doctor (okay, maybe a little).  I’m sharing this because there is an important lesson to be learned: YOU ARE IN CONTROL OF YOUR HEALTHCARE.  YOUR DOCTOR WORKS FOR YOU.  No one knows your body better than you do, and it is important to trust yourself when you think something is wrong.  As a future physician, I can tell you that doctors do not know everything and one doctor is not right for every patient.  If you’re not happy with your treatment plan or the outcome of a physician encounter, then change it.

It’s time more people start taking control of their healthcare, and it’s time more doctors start personally investing in the lives of their patients.

What’s with your blog title anyways?

What’s with your blog title anyways?

When someone has a condition that affects their life, a hindrance, a handicap, whatever you want to call it, they often say, “I’m living with it” or “I’m living in spite of it.”  And I suppose you could say that I am living with Ehlers-Danlos Syndrome.  But more importantly, I am living because of it.

If you’ve read my About Me page, then hats off to you, you’re ahead of the curve.  On that page I talk briefly about what led to my diagnosis of EDS.  A spinal injury I suffered in high school sent me in a spiral of pain that will be with me the rest of my life.  In the months following the accident I often asked myself, why me?  Remarkably, I found my answer.

It took about a year to realize there was anything actually wrong with me.  During the accident, I was thrown forward and spotters failed to catch me during a football halftime show, but after the breath-taking (literally, on the video you can hear the audience gasp) moment when I hit the ground, I jumped up and ran off the field in one piece.  The initial pain appeared immediately, but it took months for the chronic effects to set in.

Sixteen months after the accident I had surgery to repair a tear in my shoulder, the first known damage we could detect.  That surgeon then sent me to a team of spinal surgeons and a physiatrist, who determined ligaments in my neck tore and never healed during the accident, leaving a few of my vertebrae especially unstable.  But the gravity of my situation was burned into my memory when I was told I most likely shouldn’t have survived the accident.  One of the physicians told me that my body should’ve laid flaccid, and that I theoretically should’ve been left quadriplegic at best.

During my exams with the doctors we determined that I have a unique level of hypermobility (flexibility, bendiness, whatever you prefer to call it).  If you’ve ever seen a contortionist featured on a medical show like Dr. Oz or The Doctors, they’re likely suffering from this same condition.

It turns out the very problem that caused all-too-often joint aches and sprains saved my life.  Had I not had such flexible, pliable tissues, my spine likely wouldn’t have been able to sustain the impact and whiplash that occurred during the accident, and it probably would have broken.

Considering that Type III Ehlers-Danlos Syndrome, the condition that causes my hypermobility, has an estimated prevalence of 1 in 10,000-15,000, it is possible that I was the only student in my school who could’ve survived the accident.  (I actually believe this number to be far too conservative, but that’s a story for another day).

So I am alive today to tell this story because of Ehlers-Danlos Syndrome.  And I can’t help but believe that I have this condition for a reason, that I’m meant for something bigger than myself.